I have mild to moderate ME/CFS: I tested negative

I have mild ME/CFS: I tested negative

If this test is so good at detecting XMRV in prostate cancer, then why have they not marketed it for prostate cancer patients? Surely that would be a broader market; much more profitable. Cancer patients will want to know their XMRV status too, because it is associated with the more aggressive forms of cancer and would be a diagnostic for the type of treatment needed.

Click to expand...

Actually, if you read the Cooperative website, they ARE marketing their test to prostate cancer patients.

Kurt I am sending my blood to Igenex tomorrow for Lyme testing and honestly I'd rather not have lyme, because canadian doctors think that Lyme disease stops at the border- they think it's not prevalent in Canada. Therefore the treatments are difficult to get, usually underground. Visiting the Lyme websites, it sounds like the symptoms are very much overlapping and similar to CFS/ME and it's concerning to me. I also understand that the Lyme test, even western blots are not totally definitive and some doctors treat with antiiotics with only clinical signs of the disease.

What a nightmare and what a big mess.

Click to expand...

Yes, this is all a big mess. Cognitive dissonance even when one considers the conflicting results possible for the same test at different labs, Lyme has had this issue for years, and now it appears also XMRV will have that problem.

And I did not mean by saying I hoped I had Lyme that I wanted to have Lyme Disease. Rather I was hoping for some treatable explanation for my CFS. I think this is also what XMRV is about right now, people wanting CFS to be something they can treat. When it comes down to it, we should all hope we do not actually have XMRV. Anyway, good luck with that Lyme test, I did have some gains for a time with several of my Lyme treatments but nothing lasted unfortunately. The Lyme community is struggling with the same issue we are, they have a hard time defining the role of co-infections, and I think in reality many Lyme patients that can not progress on treatments actually have CFS with other primary co-infections, probably there is a lot of overlap.

Levi, I am not sure cancer patients are aware there is a retrovirus lurking on them in the same way than the CFS/ME population is aware of it. For one thing, they got an aggressive cancer- which means very likely it has already spread, usually to the bones. Then it's already too late. In my opinion, while it is interesting to know the link between prostate cancer and XMRV, there will be a need to screen patients BEFORE they get the diagnosis, and it sounds like studies are already happening for women with cervical cancer (Cancer Institute?)

Click to expand...

Also, there is no proven causal link between XMRV and prostate cancer at this time. In fact the WPI study showed that there is not even a link between XMRV and RNasL status. But I am sure some prostate patients would be curious about an XMRV link and might want to be tested. Incidentally, there is a race right now among several commercial labs, including some BIG ones that are working on XMRV test development right now, to provide affordable blood bank screening for XMRV.

A general comment, Cooperative uses a CLIA certified lab for their commercial testing so they are in the same league as VIP Dx. I don't know how many more ways I can say this, I believe the Cooperative test has as much going for it as the WPI/VIP test, for many reasons. The many negatives people are posting here is important data that should be taken seriously and can not be easily explained away.

A general comment, Cooperative uses a CLIA certified lab for their commercial testing so they are in the same league as VIP Dx. I don't know how many more ways I can say this, I believe the Cooperative test has as much going for it as the WPI/VIP test, for many reasons. The many negatives people are posting here is important data that should be taken seriously and can not be easily explained away.

Click to expand...

With 11 out of 11 negative it starts to look like one of the labs are getting fals results. VIP DX results are of course more in line with the results (and from other labs) behind the Science study. The fact that there was not so many positive results in the healthy controls in the original WPI-study also indicates to me that its not just something that could be explaind with a fault in the test methology.

So CD cannot get a + result it seems. I think it may be very hard for any lab to replicate the WPI, the NCI and the Cleveland Clinic's tests. Hopefully this situation will be remedied soon. Shouldn't researchers from the successful labs be in the labs trying to replicate this and helping those researchers find it?

Don't go on about competition. In some cases like this one, competition is not what is needed, cooperation is.

So CD cannot get a + result it seems. I think it may be very hard for any lab to replicate the WPI, the NCI and the Cleveland Clinic's tests. Hopefully this situation will be remedied soon. Shouldn't researchers from the successful labs be in the labs trying to replicate this and helping those researchers find it?

Don't go on about competition. In some cases like this one, competition is not what is needed, cooperation is.

FYI, Cooperative has pulled their XMRV PCR test off the market until the controversy over XMRV PCR testing is resolved. That is on their website now. However Cooperative says they are continuing to support research efforts.

Note that VIP Dx has also pulled their XMRV PCR test off the market. That suggests that prior PCR testing may be suspect, although WPI has not said that literally.

That pretty much puts XMRV testing back into the research domain. The culture study still being offered by VIP Dx is not specific for XMRV, although a positive would indicate some MuLV class infection has been present. However, that might include an endogenous retrovirus, there are some that cross-react with MuLV antibodies used in the culture study.

The culture study still being offered by VIP Dx is not specific for XMRV, although a positive would indicate some MuLV class infection has been present. However, that might include an endogenous retrovirus, there are some that cross-react with MuLV antibodies used in the culture study.

Endogenous Retroviruses? I thought that xmrv was only #4 (human) retrovirus found to date? I knew there were many endogenous viruses, but I didn't know that to be true of retroviruses??

Click to expand...

Yes, there are many human endogenous retroviruses. They are called HERVs. Here's an article about them. XMRV, HIV, etc. not endogenous -- they are exogenous, meaning they come from outside of the body.

Kurt pointed out that WPI's PCR testing method wasn't specific for XMRV, it looked for MuLV and may pick up HERVs. That's what I understood anyway.

Becuase I do trunt WPI, and because they're saying that had you been found positive for XMRV at any point you do not need to re-test yourself - I believe that their test is reliable. So, I wonder, Cort, how do you know that their test might find other MuLV viruses (and they would not say so and claim that it is definitley XMRV) - Or did I and others didn't understand you?

I just should mention that, at least in their PCR testing in the study, they found XMRV in 67% of the ME/CFS patients and in only 3.75% of the healthy control group - and I would imagine that the test does not distinguish between people when it comes to see if they're XMRV positive. However, I believe Cort's message is about the culture test that VIPdx is using, no? And still, I trust them, so I wit for an explanation and also for the answer: how much do you, Cort, trust their testing, at least when the result is "XMRV positive"?

Not very often. When they become activated bad things can happen (like CFS maybe?). And they can be activated by HHV6, per research at Tufts. Also, they find HERV K18 in both MS and CFS. Odd, isn't it? K18 produces a superantigen (sAG) that creates a lot of cytokine activity.

Endogenous Retroviruses? I thought that xmrv was only #4 (human) retrovirus found to date? I knew there were many endogenous viruses, but I didn't know that to be true of retroviruses??

Click to expand...

Don't know why writers keep printing that, it is just not true. There have been several other retroviruses found in humans, including one found in MS patients. But yes, there are over 4,000 retroviruses (HERVs) in human DNA. And there is evidence some are active in CFS. Incidentally HERVs can encode reverse transcriptase, which is the evidence of retroviral activity found in CFS.

Kurt pointed out that WPI's PCR testing method wasn't specific for XMRV, it looked for MuLV and may pick up HERVs. That's what I understood anyway.

Click to expand...

That was the WPI antibody testing, it was testing for MuLV antibodies which can sometimes pick up activated HERVs. And we know HERV K18 is active in CFS, so that might be a problem for antibody testing for XMRV. The WPI PCR test was specific for XMRV, but there are some questions about its accuracy based on replication/validation studies (some of which have not been formally reported).

I knew a little about the endogenous retro-viruses that have lived dormant in our genome for generations...... but, I didn't realize the posts here were referring to this simply because I just didn't think it possible for Dr Judy and the WPI research team to rely on a test that could confuse it with an active retroviral infection. That seems beyond comprehension what with their expertise and experience. But obviously they did use such a test if that's the reason for the elimination of the PCR test.

Click to expand...

I suggest you google 'researcher bias', WPI was hunting XMRV and trying to build a case for it. That is a risky proposition in this type of science. They may have made no mistakes experimentally, but just found a strange phemonenon that is not quite what they thought it was. For instance, maybe some other MuLV virus is there, or maybe a HERV is cross-reacting. There are MuLV type HERVs that can give false positives. This has been a regular problem for over 20 years in research into retroviruses for other diseases.

There is little question that WPI found something, otherwise their MuLV antibody tests would have been negative. But there are more possibilities than just XMRV.

Becuase I do trunt WPI, and because they're saying that had you been found positive for XMRV at any point you do not need to re-test yourself - I believe that their test is reliable. So, I wonder, Cort, how do you know that their test might find other MuLV viruses (and they would not say so and claim that it is definitley XMRV) - Or did I and others didn't understand you?

I just should mention that, at least in their PCR testing in the study, they found XMRV in 67% of the ME/CFS patients and in only 3.75% of the healthy control group - and I would imagine that the test does not distinguish between people when it comes to see if they're XMRV positive. However, I believe Cort's message is about the culture test that VIPdx is using, no? And still, I trust them, so I wit for an explanation and also for the answer: how much do you, Cort, trust their testing, at least when the result is "XMRV positive"?

Thanks in advance!

Click to expand...

I am Kurt, not Cort, sorry if that is confusing. Cort is a blogger/journalist and I was a researcher before CFS (I was in the cognitive sciences). Whether or not WPI found what they thought they found is not a matter of trust. I do trust that WPI followed the steps they said, and found something, had the results they reported. I don't trust them though entirely because the Science article was not complete, did not reveal all the facts of how they ran their testing, and that is a big error in science. For example, they ran multiple samples several times each for the patients to get the positive results. That HAS to be reported as it increases risk of false positive. But they did not include that in the Science article.

Anyway, the real question is whether that result is what they think it is. I think there is a good chance WPI found something that created the appearance of XMRV but was not exactly XMRV. This is not their fault, it just happens this way in science. What I do think IS their fault is that they have been way too confident, and too secretive about their methods, which slows outside validation of their findings. That is a good business move but not very scientific and we will see how that works out for them ...

I would like to see WPI focus more on CFS and less on XMRV, just FWIW. We ALL have CFS, but at this point whether XMRV is a factor is unproven, even if it is present, correlation is not cause. WPI has not treated nor cured anyone yet, I would like to see what they are planning in the event that XMRV does not work out. At least I hope they have a contingency plan, we really need a group like WPI to look at the big picture of CFS.

Sorry for my confusion about the name, Kurt. As to WPI's focus: I think we all here want to be cured. And I believe that we should never abbonden that hope. Therefore, I'm happy that there is a resaearch center that tries, at least also, to find the cause for our diseases, in order to see if it's possible to cure us. As fat as I know, WPI was established not in order to make XMRV research. It was established in order to make research about neuroimmune diseases and try to make these patients feel better (and hopefully, be fully recovered and not ill anymore). Therefore, I believe that if it would be found that XMRV does not cause ME/CFS, the WPI would continue to do research about what does cause ME/CFS and about what can make ME/CFS patients feel better in the meantime. Right now, when there such a promising discovery of the XMRV in ME/CFS patients, I don't see why the WPI needs to invest his limited resources in any other thing regarding ME/CFS. It's possible that they have found the cause of ME/CFS here. If it would be proven correctly, that is such a major discovery I can't even begin to explain (and I guess everyone here think so too...). So I think that right now they should push this research with all their powers.

Finally, I would say that for a moment I don't think you mean to bee wrong in what you are saying. I just want to say that John Coffin, which is a very known retroviroligst, said the for a first paper their paper was as good as it gets (and yes, he did mention afterward "but it's just a first paper", but I think that has nothing to do with my point here). I think it's possible that he didn't think about what you're saying (and that you're right here), but I think it's also possible that he did think of that and ruled that out (perhaps because he knows something that we don't). Anyway, you might be wrong but just as well he might be wrong. I just guess I hope that you're the one who is wrong here (and also that XMRV would be found the cause of ME/CFS and also fibromyalgia, which I have, and that it would be entirely curable, even though today there are no drugs that cures people sick that have retroviruses).

One more thing: I would like to thank, again, the WPI. It's such a good thing to know that there is a research center that is concentrated in researching our diseases

whatever they found was infective with a unique base sequence(s).Xmrv is now being investigated by a number of researchers.99% of HERVs can,t replicate for various reasons---I could go into a long virology monolog but I wont.The odds of this being a herv are less than ! in a hundred.The chances of detecting a HERV with PCR are very small you need fast replicating viruses Whatever this is has base sequences never seen in Hervs.geneticists claim that Herv-K(the last known herv to be able to replicate naturally) has not really been active since we diverged from chimps.The simplest parsimonious explanation is that this is a novel retrovirus which,as you would expect,darn difficult to detect with PCR.

whatever they found was infective with a unique base sequence(s).Xmrv is now being investigated by a number of researchers.99% of HERVs can,t replicate for various reasons---I could go into a long virology monolog but I wont.The odds of this being a herv are less than ! in a hundred.The chances of detecting a HERV with PCR are very small you need fast replicating viruses Whatever this is has base sequences never seen in Hervs.geneticists claim that Herv-K(the last known herv to be able to replicate naturally) has not really been active since we diverged from chimps.The simplest parsimonious explanation is that this is a novel retrovirus which,as you would expect,darn difficult to detect with PCR.

Click to expand...

Gerwyn, great post. I for one would like to hear that long virology monologue sometime!

Finally, I would say that for a moment I don't think you mean to be wrong in what you are saying. I just want to say that John Coffin, which is a very known retroviroligst, said the for a first paper their paper was as good as it gets (and yes, he did mention afterward "but it's just a first paper", but I think that has nothing to do with my point here). I think it's possible that he didn't think about what you're saying (and that you're right here), but I think it's also possible that he did think of that and ruled that out (perhaps because he knows something that we don't). Anyway, you might be wrong but just as well he might be wrong. I just guess I hope that you're the one who is wrong here (and also that XMRV would be found the cause of ME/CFS and also fibromyalgia, which I have, and that it would be entirely curable, even though today there are no drugs that cures people sick that have retroviruses).

Click to expand...

Yes, I could be wrong. But I am a researcher and just can not ignore data, this is hard to explain, but having run experiments myself, published in peer-review journals, etc., I know how a scientist can find what they want to find rather than what is really there. Researcher bias is a very serious problem across all scientific disciplines, nobody is immune, no matter how well intentioned. So therefore a consensus process is essential, and many outside researchers must be able to find the original claims, and in many different ways, to prove the claims are real.

Early after the WPI XMRV finding I was a strong supporter, I quickly read the prostate studies for XMRV (did not take long, there is not much research there yet), and even came up with my own causal model (XMRV may infect neuroendocrine cells, I posted on that back in October). But then something completely unexpected happened, I found I had a connection with one and then two XMRV replication studies (now I have also heard reports from even more). Because of my background I was able to talk in depth with a researcher involved in this, and also learn about multiple XMRV replication efforts. And this changed everything because I learned that outside labs following the experiment as outlined in the Science article were not finding XMRV. So I started to study both sides of this issue, and had to say 'duh' several times as I realized that my own personal need for an explanation for CFS had created a 'patient bias' in myself. I had suspended ordinary scientific skepticism in evaluating the WPI claims. And the approach of WPI to the patient community did not help, I have never seen a more patient-focused research group, they are amazing. But that is a distraction from objective evaluation. So I studied and studied and talked with the labs, and slowly a more complete picture emerged. A host of issues and problems emerged.

There are specialists who know much more than I do about testing and they will ultimately weigh in on this, in fact that should have already happened, but it has not. That generally means there are problems. Ask Coffin what he thinks today, might be interesting to hear.

There are some obvious issues with a retroviral explanation for CFS, such as explaining outbreaks (almost impossible with a retrovirus). Then there is the research literature into CFS, for instance, the finding that 96% of PWC have the Ciguatoxin Epitope. That is not even a protein, it is an ether, so can not be produced by a virus or retrovirus. That would be from an algae or protozoa, or some other organism like that. Incidentally there was a recent outbreak of a CFS type disease in Corvallis Oregon that turned out to be a protozoa (Blastocystis).

whatever they found was infective with a unique base sequence(s).Xmrv is now being investigated by a number of researchers.99% of HERVs can,t replicate for various reasons---I could go into a long virology monolog but I wont.The odds of this being a herv are less than ! in a hundred.The chances of detecting a HERV with PCR are very small you need fast replicating viruses Whatever this is has base sequences never seen in Hervs.geneticists claim that Herv-K(the last known herv to be able to replicate naturally) has not really been active since we diverged from chimps.The simplest parsimonious explanation is that this is a novel retrovirus which,as you would expect,darn difficult to detect with PCR.

Click to expand...

Good points Gerwyn, yes HERVs usually lack the pol gene and can not replicate. But I disagree with your odds because even though they do not replicate, they can be continually activated from human DNA by a trigger virus. And it happens that Herpes is one of those trigger viruses that activates HERV K18, which in fact IS much more active than had been thought. That is really just a proof of concept, might be some other HERV. I realize WPI did say they ruled out HERVs by blasting their sequence against human DNA, however they did that in a lab that had studied the exact sequence they found (Silverman's lab). So contamination was not ruled out. (incidentally that also applies to the two sequences they ran for the Science article, also done at that lab)

A novel retrovirus may have been found, I agree that is the simplest explanation. It just may not be the cause for CFS. Also the retrovirus may not even be XMRV, if it was, then other labs using more sensitive testing would have easily confirmed their work by now. You just can not ignore data. I realize not everyone is privy to the data I have seen and nobody has to believe me at this point. And that's fine. There are many possible explanations, my point is just to not let 'patient bias' get in the way of objective thinking about the Science study. I have reviewed that study and also Mikovitz's additional comments on how they ran the study point by point with a Ph.D. retroviral researcher and there is a possible alternate explanation for everything they found. So this has to be 'run down' point by point by serious researchers experimentally, and that will take time.

I expect we may have some XMRV publications from other very credible labs by summer, hopefully anyway. Meanwhile HERVs are certainly an interesting angle to explore. Also Dr Light's work is interesting, he found something important about CFS. And the WPI virachip study that showed some HERV activity along with HHV. And Dr Huber has found that CFS has the same HERV activity as is found in MS. This is really getting interesting, with or without XMRV.

Also, even if an MuLV type retrovirus is part of the reason our immune systems are not working right, it is probably co-infections that are creating the actual CFS problems, and they can already be identified and treated.